The National Registry
Advancing research in myotonic dystrophy (DM) and FSHD
The National Registry aims to advance research in DM and FHSD by helping recruit patients to participate in clinical studies. These studies may involves traveling to research centers across the US or completing questionnaires at home. Each study helps doctors, investigators, and care providers better understand the biology, progression, and other issues of DM and FSHD.
Collecting and tracking clinical information about DM and FSHD
By participating in the Registry, patients complete questionnaires each year about their diverse symptoms. This information helps researchers better understand these rare diseases, their management, and changes over time.
Building teamwork amongst doctors, investigators, and patients
The Registry promotes sharing of information about exciting opportunities and advances in DM and FSHD between care providers, researchers, and patients. Such teamwork provides a great opportunity for all "key players" to learn from each other, discuss which symptoms are most important, and strive for improvements in clinical care and therapeutic treatments.
The Registry has been funded by the National Institutes of Health (NIH) from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (contracts #N01-AR-5-2274 and #NO1-AR-0-2250), and the National Institute of Neurological Disorders and Stroke through the Senator Paul D. Wellstone Muscular Dystrophy Cooperate Research Centers (grant #U54-NS048843).
Last Reviewed and Updated 4/24/2012
